Update on our sweet angel bryce, I have been avoiding writing this for 3 days, because every time I start, tears roll down my face. We have been searching for a diagnosis for 6 years, every time we would go somewhere new, we would think this will be the Dr that can help us. Well, the search is over, bryces blood work came back Friday and confirmed our nightmare, he does have what is called an nbia (neuro degeneration of brain iron accumulation), this is a progressive neurological disorder. So this means starting him on the iron chelation 2 months ago was the right decision. Now, all we can do is pray that this will help remove some of the iron in his brain and slow down the progression of this horrible disease. Bryce is scheduled for an mri on October 21rst, to see if the medicine is helping. I have never in my life felt so helpless, I just want him to be with us forever, all the other things we used to want for our son seem so small, now I just pray he can win this battle, if anyone can, it will be him, he is the toughest little boy I have ever met, I look at him everyday knowing one thing for sure, we are blessed to be his parents!!! Will keep everyone posted as we find more out, please say an extra prayer for our angel.
Posted on: Wed, 24 Sep 2014 01:02:23 +0000
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